Doctors call them heart sounds. The sounds they hear as blood flows through the heart, as valves open and close.
There are some other heart sounds, in my own heart. They are the sounds, the lives of those born with bicuspid aortic valves. Others have another kind of aortic disease in their chests. They also have entrusted their life stories to me. Too precious to be lost or ignored, I share their heart sounds with you here.

Saturday, October 18, 2014

Surgery Day - Getting a New Heart Valve

Getting a new heart valve is a special journey.

Just focus on your destination, that high point across the valley.

You will soon be there!

The Kissing Place

Outside the operating room door there is always a special place. The exact location varies in different hospitals, but it is generally as far as you can go with your loved one before surgery. This is the kissing place. I hope no one ever goes into the operating room, which I will call the "OR" from now on, without that expression of love and support.

This is not a "last kiss".

Don't ever think it!

It is a "see you soon",

"I'll be here when you wake up" kiss.

I had given my husband that kiss and had been shown the small waiting room. This was the place where a nurse would come out and update me from time to time. I had dear friends with me, standing by us both so loyally that morning. It was very early still. My husband was the first case of the day. I always recommend that if possible. One hopes the surgeon is nice and fresh, well rested, the first thing in the morning!

Our Special Friend in the OR

Yes, I thought I had gone as far as I could that morning with my husband. But that was not the case. I have written about specially requesting the anesthesiologist, Dr. T. We had met him the day before, and he spent lots of time with us. He took my husband's blood pressure, which was very high. I will always remember his words, "If the pressure is that high in his arm, imagine how high it is in his heart." All because of a severely narrowed, plugged up aortic valve. I was so glad we were within hours of removing that obstacle to freely flowing blood once again.

There is an area where the anesthesiologist and others will do their preparation work before the person goes into the OR itself. In this hospital it was a fairly large room, and Dr. T. invited me to come there and sit beside my husband while he worked on him. There were no other patients, and I have very nice memories of the atmosphere there. Dr. T. was a calm man with a serious, confident manner. He had some sort of board underneath my husband's arm, there to stabilize it as he attached various lines to him. Whatever drugs were going in were definitely relaxing my husband, as he chatted with Dr. T. At one point, he flinched at something, so of course I did too. Dr. T. just looked across at me and said he was almost done! And soon he was. He asked my husband what he thought of his handiwork. Very seriously, my husband moved his arm with all the tubing very close so he could see (no glasses, and he is extremely "blind" without them), and inspected it carefully. He very seriously told Dr. T. it would be fine as long as it all was functional. Ah, those drugs were at work, as he calmly approved the doctor's work!

No Ordinary Days

At some point, others who would work in the OR that day also came into this room. I do not know what their roles were. I distinctly remember them chatting rather lightly about their social lives, sharing pictures with each other. I remember thinking, don't they know what a special, momentous day this is?! How could they be talking about parties?

Of course, surgery was something they did every day, an ordinary day for them.

An ordinary day for me would have found me at my new job. Yes, I had changed companies in the middle of all this. My manager and the company were very kind to me and found a way for me to have the time away I needed for my husband's surgery. Today, my workaday world seemed as far away as another universe.

Somehow I hope that those in medicine, and especially in surgery, never lose a feeling of wonder about what they do. There are others who spend their days at work making heart valves. Others are involved with pacemakers. All these lifesaving devices for the heart. I hope the same for them. The jobs they do can never be just ordinary jobs, ordinary work. Every day is special when you are saving lives.

I Will Take Good Care of Him for You

Now, it really was time for my husband to go through that one last door, into the OR. There I could not go. When Dr. T. told me, "I will take good care of him for you", those were not just words. I knew he meant it. Off they went together, but I knew he went with a friend, Dr. T. He had told us that the surgeon was a good technician. Now it was up to the skill of the surgeon's hands, his eyes, his judgment, to give him a new valve.

Most of the time, we do not get to know the anesthesiologist very well, but they are a very important member of the surgical team. There are no office appointments with them before or after the surgery. Another time perhaps I will spend more time on their role, and how important they are, although we typically do not know them well at all.

I tell those I meet that surgery day is a good day.

Not an easy day, but a good day.

It is always a good day when life is saved.

Waiting

Waiting. This is what makes this such a hard day. Your loved one is in that drug-induced sleep, blissfully unaware of what is being done to save their life. But you are wide awake, adrenalin coursing through you, prepared for whatever may come.

The nurse came out and updated us at key points. Generally, her updates were encouraging, telling me things were going as planned. In my experience, nurses give updates like this, meant to reassure. It is for the surgeon, later, to tell more of the story.

I remember asking her once how the surgeon was doing, and she smiled and told me he was listening to "cowboy music". Ah, so they have music in the OR. Whatever kind of music helped them do their work was just fine with me!

My friends encouraged me to walk around a bit, between updates. I did a little, but just could not stray very far from that little room in case they needed to find me. (This was not the day of cell phones, as it is today!)

During this waiting period, a frightening thought dawned on me. They would stop my husband's heart. His heart had been failing. What if it didn't start again? I had never let my mind go there before, but now I waited rather desperately to hear that his heart was beating on its own again.

At last, she told me that the new valve was installed. Then, that his heart was beating on its own once more! Oh what a wonderful heart, to take so much abuse and come back to beat strongly once again!

Let me say now, the heart and the brain both love to heal. They will fight to come back. In these years since, we have proved this more than once. Do not let anyone in medicine discourage you in the fight! Your own body will tell you. You will get better. You can have your life back!

Surgery Ends

I was not a good judge of time that day. I just know it did finally pass. The nurse was done now. The next update would be from the surgeon, and then I could see him.

And then, into the waiting room came our friend, Dr. T. How sweet of him! Other than his kindness, what stays with me now is his description of my husband's valve. He said it was the worst case of calcification on an aortic valve he had ever seen. Describing it, he said the calcification looked like cauliflower. Leave it to my husband to have the very worst! Well, it was gone now. It could not hurt him any more.

Dr. T. left. I have never seen him again. He has a special place in our heart sounds always. May everyone have an anesthesiologist like him.

When the surgeon came, he had more details for me. It is the surgeon's job to tell you everything. Your loved one is his patient first and foremost, although other doctors are involved. The surgeon's name is on that wrist band the patient wears.

He told me that the new mechanical valve fit well into my husband's heart, and that his heart had started up again well. Then he began to tell me about the severe calcification too. He told me that he had been very careful, but there was so much calcification that there was a risk that some of it broke off and got into my husband's blood stream. Any loose particles could either go to his brain, where it would cause a stroke, or travel to his finger tips or toes. The bottom line: my husband might have had a stroke during surgery, and we would not know until he woke up.

Yes, it is the surgeon who tells you both the good and the bad news, after the surgery is over. I wondered why they had not warned us about this before hand. My husband had gone to sleep without being warned of this high risk of stroke.

That First Look
Your loved ones do not see themselves, and even after they wake up, the drugs may still prevent them from remembering those early hours later. It is a good thing for them. But they need you to look at them, touch them, be there when they awake. Don't worry. Your loved one is still there, no matter how they look at that first glimpse.

A nurse took me back to some kind of holding area. I was glad my dear friend, who had years of nursing experience, went with me. I thought it was a terrible place!

Several people were apparently also coming out of various kinds of surgery, all of them lying on some kind of stretchers. This was a recovery area, where they kept patients before moving them to intensive care (ICU) or somewhere else. My eyes searched, and then I saw him.

He was lying there motionless, on his back. Of course there were many tubes and lines. He could not breathe on his own. What shocked me most was his color. He was a bright red! He had been so terribly pale, no color at all, before surgery. Now rather than just normal color, his skin had the appearance of a boiled lobster. He has had two additional open heart surgeries, and I have never seen that again. I have never had an explanation for it.

This is the time to have a strong, sturdy friend with you. She quickly said in a positive voice, "Oh, look how pink he is now!" Yes, no doubt his blood was flowing much better now. Next they would take him to ICU. I could see him there, about 15 minutes every hour.

Waiting for Him to Wake Up

My husband's parents were flying that day of his surgery. We had planned it so that they need not endure the hours of waiting with me at the hospital, but would arrive that evening and be with us for whatever would unfold next. Not an easy thing for them to do, traveling to be with this oldest child and first son of theirs, who had lived from childhood with a heart murmur.

Now I wondered how the timing would work, bringing them from the airport. I wanted to be there when my husband first opened his eyes. I especially wanted to see for myself what he would be like. Would there be any signs of a stroke?

At some point, I encountered the cardiologist. He told me that he had seen the valve that was taken out of my husband's heart. The way he said it implied it was in terrible condition, which I already had been told. The one thing I wanted to know, "Was it bicuspid?" "Yes." There was no doubt now that my husband had been born with an aortic valve with only two leaflets. I believed it now, and never forgot it.

Intensive Care (ICU)

I am not very brave at all. Intensive care is so good for my loved one, I know, but it not easy for me to take those steps and enter there. I do much better once I see my loved one.

My first experience with this was with my father. He had cancer and radiation was tried as one of his last treatments. Aimed at destroying the cancer, it also caused him to bleed suddenly, and he was rushed to ICU. Yes, it was a good setting for him then. Each patient in their own little cubicle, all in a semicircle around a desk area in the center for the nurses. But the gravity of the illness of each patient overshadowed attempts to make it feel close to a pleasant setting.

Now my husband was in ICU, with tubes of various kinds, a machine breathing for him. It was the first time since our marriage that I felt truly separated from him, although I stood there beside the bed and touched him.

I may not be very brave, but I am convinced of the importance of being positive. No one, including myself, shall be negative at all when someone is fighting to reclaim their life after surgery.

From the first moments, before they are awake, I do not want any trace of negativity to come near them. They just need loving reassurance that they are doing wonderfully, that all is well. I have done my best to do this. I need hope myself, and I would never rob another person of that precious lifeline.

It was a time for patience. Waiting for him to come back to me.

And then, there he was! He announced his awakening by setting off loud beeping, blaring alarms to alert the nurse. He was trying to move. There were his eyes, open at last!

We were connected again! I don't remember all I told him. I do remember the intelligent look in his eyes. He could not speak with the respirator tube still in place, but he nodded when I mentioned his parents arriving that evening. He has always had an amazing memory, and at least recent events were still there.

At times like this, you really want to know each other. That unspoken communication is priceless. I was satisfied. I did not need to wait for the doctors to tell me. If there was any damage at all, I thought it would be minor. I just wanted him to still know and love me! He did!

Later, I was there when the cardiologist came by. He asked my husband to move his legs and wiggle his toes, which he did beautifully! My husband still had the tube in and could not talk, but I read his mind. He was wondering what was wrong with the doctor! The surgery was on his heart, not his legs and feet! He had not been told yet how worried they were about a possible stroke.

God Will Guide the Surgeon's Hands

My initial assessment was right. There was no stroke at all. He just needed to heal and get strong again. Before surgery, my mother told me something very special. She told me that God would guide the surgeon's hands. None of us knew how challenging my husband's situation would be, with the terrible excessive calcification of his valve. I was comforted then, by that thought, and grateful for those hands and how they were guided. If that had not been the case, how different the outcome might have been.

He spent two days in ICU. It should have been just one, that was the goal. But he was not strong enough that first day. I walked in once as they were trying to get him to sit up. "Oh, look, there is your wife. Sit up for her!" His head wobbled on his neck like that of a baby bird, too heavy to hold up!

I had to sign in each time I visited ICU. A volunteer was there with the list of ICU patients. One time, as the volunteer went down the list of names, I noticed what was written down for my husband. His condition was serious! I was shocked. Everyone was being so positive and encouraging. I thought he would at least be considered good!

He had a mechanical valve now. I heard the cardiologist and the surgeon discussing when to start the coumadin that would prevent blood clots from forming on this pristine, new valve. The cardiologist pressed for starting soon. The surgeon did not want any uncontrolled bleeding. They worked it out. My husband cooperated by not bleeding!

Despite any labels used to describe him, he did get stronger, and it was time for him to go out on the floor.

No Private Room Available?!
Having a private room after open heart surgery is so important. Some hospitals have been built in such a way that the rooms are essentially private but can be billed as semi-private. Those are technicalities, but a good thing to understand. We were willing for extra cost to have a private room.

But, this hospital did not have any private rooms open when it was time to leave ICU. His first room on the floor was with an older man who had a terrible cough. I was so upset, afraid that my husband was being exposed to some sort of lung infection right after surgery, and having survived pneumonia himself. They told me that the other patient was not contagious. He had aspirated fluid into his lungs somehow.

A private room did become available soon, and he made good progress. We walked the halls together, working on getting strong enough to go home. Our local internist came every day that he was in the hospital. Much later, I realized that there were never any bills from him for those visits. He told our friend that most of his patients were not as sick as my husband. No doubt he wondered if my husband would survive, and if he did, what he would be like.

No hospital experience is complete without mentioning nurses. They took good care of him. Perhaps that in itself is remarkable. Our later adventures in hospitals cannot be so glowingly described.

Going Home

We were told that after surgery, nothing tastes very good. But I did not have surgery and can vouch that the hospital food was terrible. At home, his mother would be there, cooking for him. Both his parents were there while I returned to work. It was not easy for his parents, no longer young, to do this. Seeing their son, whose heart murmur must have weighed on them over the years, go through this hurt them too. But they saw him become strong again. We have always been thankful for their loving support. They did not live to see the day when their daughter would have a high risk surgery too.

We were discharged on the 7th day. There would be one follow up with the surgeon. Our local internist was given the job of monitoring my husband's coumadin levels.

This is a long post. Surgery day is a long day! I have shared details here in hopes of giving a glimpse into what is a foreign world for most of us. We enter that world of hospitals, operating rooms, nurses, and doctors only when something is wrong, when we need help. My husband has had two additional surgeries and a stroke since that time. I have gone through surgery with others also. Some I have known well, others not as well. There are heart sounds in those stories, too, still to be shared.

For now, I leave you here, with my husband's heart strongly beating once again, as we resumed our normal life.

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Arlys Velebir

Chairman & President of BAF

Disclaimer

Arlys Velebir is the President and Chairman of the Bicuspid Aortic Foundation. The statements and opinions presented here are entirely her own personal thoughts, and do not in any way represent the position of the Bicuspid Aortic Foundation, its Board of Directors, Scientific Advisory Board, or volunteers.